Looking for Glioblastoma Multiforme Stage 4 survivors (brain cancer)

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RE: Looking for Glioblastoma Multiforme Stage 4 survivors (brain cancer)

by mgreggsmith on Sat Sep 29, 2012 03:59 AM

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I am one of those strange cases who, after nearly 6 years, is doing fine following surgery, radiation and chemotherapy for a stage 4 GBM.  So don't ever give up.

Here is an article from some of the top neuro-oncologists in the country.  You may find it useful.

http://www.healio.com/hematology-oncology/neuro-oncology/new

If you can't open it, just go Google and search for the title of the article:  "New therapies improving survival in patients with glioblastoma."

Good luck.

Gregg

RE: Looking for Glioblastoma Multiforme Stage 4 survivors (brain cancer)

by mehitabel on Sat Sep 29, 2012 06:59 PM

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fwiw:

http://www.lucastafur.com/search/label/cancer

"Recent evidence suggests that this metabolic therapy is promising. One case report (6) has shown a rapid regression of glioblastoma multiforme in an old patient using the guidelines proposed by Seyfried et al (7). This patient started the metabolic therapy with a water-only fast, switching then to a restricted KD which delivered 600kcal/day for 14 days. Dexamethasone was also eliminated (because high dosage steroid medication increases gluconeogenesis and blood glucose levels, while enhancing apoptosis resistance in tumor cells). Because of development of mild hiperuricemia, the KD was changed for a non-ketogenic calorie-restricted diet which also delivered 600kcal/day. Aside from the complete regression in such a short time (2-2.5 months), the most surprising finding in my opinion was the recurrence of the tumor after discontinuing the metabolic therapy, which strongly suggests that the therapy itself was the most infulential factor in cancer regression."

RE: Looking for Glioblastoma Multiforme Stage 4 survivors (brain cancer)

by lizbond70 on Thu Oct 04, 2012 01:30 PM

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On Sep 29, 2012 6:59 PM mehitabel wrote:

fwiw:

http://www.lucastafur.com/search/label/cancer "" target="_blank" rel="nofollow">http://www.lucastafur.com/search/label/cancer " target="_blank" rel="nofollow">http://www.lucastafur.com/search/label/cancer

"Recent evidence suggests that this metabolic therapy is promising. One case report (6) has shown a rapid regression of glioblastoma multiforme in an old patient using the guidelines proposed by Seyfried et al (7). This patient started the metabolic therapy with a water-only fast, switching then to a restricted KD which delivered 600kcal/day for 14 days. Dexamethasone was also eliminated (because high dosage steroid medication increases gluconeogenesis and blood glucose levels, while enhancing apoptosis resistance in tumor cells). Because of development of mild hiperuricemia, the KD was changed for a non-ketogenic calorie-restricted diet which also delivered 600kcal/day. Aside from the complete regression in such a short time (2-2.5 months), the most surprising finding in my opinion was the recurrence of the tumor after discontinuing the metabolic therapy, which strongly suggests that the therapy itself was the most infulential factor in cancer regression."

My brother had stage four glioblastoma 25 years ago.  They removed the tumor and gave him radiation, giving him 6 months to live.  It has been 25 years, now he has another tumor, but it is not the same kind of tumor.  It is a tumor caused by the radiation of the glioblastoma.  He just had his second tumor removed 10/01/2013.  The doctors said they have never seen a tumor like this, as no one with glioblastoma has lived long enough to develop this kind of tumor.  We should know soon whether it is malignant or benign. But there is hope for those who have stage 4 glioblastoma.  To me and my family, it was 100% Gods healing hand involved.

RE: Looking for Glioblastoma Multiforme Stage 4 survivors (brain cancer)

by CCarol on Thu Oct 04, 2012 01:53 PM

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My husband with GBM is with us ten years, when drs only gave him months to live at the original diagnosis. Good for your brother.

RE: Looking for Glioblastoma Multiforme Stage 4 survivors (brain cancer)

by RobinMB on Tue Oct 30, 2012 02:28 AM

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Hi Sara,

I have been working with Dr. Jeanne Wallace (nutritionist for brain tumor patients) to find the best supplements for my husband who has GBM IV.  What supplements do you recommend?  My husband is currently taking curcumin, boswellia, maitake mushroom, fish oil, l carnitine, alpha lipoic acid and IP6.

Thank you so much!!!

RE: RE: Looking for Glioblastoma Multiforme Stage 4 survivors (brain cancer)

by harsh_bhimani on Fri Mar 08, 2013 09:12 AM

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On Sep 18, 2011 1:19 PM enno-damayanthi wrote:

my mom has been diagnosed of GBM level 4 on July 2011, she had a brain surgery at that time. Now she didn't take any radiation or chemotheraphy. She just takes some herbal medicines (made from soursop leaves which is believed can cure cancer) and lives as a vegetarian. Hopefully she can survive. Now she feels so healthy and has a full spirit to live. I love u mom, be strong..

Hi,

Glad to know about soursop based herbel tablets.. My father also has GBM grade 4. Right now he is Irinotecan + Avastin after taking 33 seatings of RT along with 120 mg of Timozolomide, followed by 5 doses of Timozolomide.  I heard about Soursop and just baught 1 kg of it. Now, I am confused on how to take it?

- Can he take it along with ongoing treatement of Irinotecan + Avastin ? 

- If yes, how can he take it? Juice? or just cut it and eat it?

Appreciate your response in advance.

Regards,

Harshad

RE: Looking For Glioblastoma Survivors Stage 4

by Agrestigrl on Tue Jun 11, 2013 11:54 AM

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I was diagnosed 6/2011 with stage IV GBM, I was found having a seizure in my home and at first THET thought was a bleed, only a few weeks later to discover a 4cm mass under the blood on follow up. It has been a long journey, though luckily I live in a state where some of the best cancer care is located,the mass was respected and 3/4ths removed, I beg and radiation soon after, twice a day for many weeks, followed by Temodar which I was unable to take as I repeatedly required platelet infusions.so it had to be stopped , another chemo started, which I unable to remember the name, it was a clinical research med, it unfortunately did not work and had to be stopped, another chemo began after a 4 month wait in order to give my labs time to get normal, bausutinib began, which seemed to work in begining but then again tumor grew, Avastin infusions began which we at first had a nice response to, again the beast as I call the GBM grew. avastin will continue but lumestine is being added in order to try to hit tumor harder. The beast is currently inoperable as it has wrapped itself on the main vessel of the brain.i also am on decadron for brain swelling and I had sodium washed at one point, keppra twice a day, nuvigil was begun but insurance will not cover it, I have also tried novocure , but had to stop as I was already on one clinical trial and they would not allow 2 at same time, good luck to all, try to stay positive, my prayers go out to all affected by this horrible disease

RE: Surviving Gbm

by raharaha on Tue Jun 11, 2013 02:46 PM

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On Jun 22, 2012 9:07 AM pljohn wrote:

My 63 year old dad seems to be doing well post surgery, Radiation with Temozolomide. He is now on maintenence Temozolomide. He's on the 2nd month out of the prescribed 6 months.

He's been fine except for being a little tired this summer. We live in South India which gets pretty hot. I'm doing fine seeing him alright...unable to relate the prognosis to 'life at the moment'. 

I normally won't worry un-necessarily...but as the months go by, i'm starting to feel anxious. The radiation onchologist gave my dad 2 years...and 5 months are up already.

I know that a majority of people in this forum are from the US where clinical trials etc are available. Someone please tell me whether there are long term survivors who did not undergo any other treatment other than the RT and Temozolomide/ and other conventional treatment.

Any long term survivor from India? I really dont know what to expect... anxious.

-Priti

Dear Priti , I am an Indian living in Kolkata-700019 ,India suffering from GBM Grade IV ,Left Pareital Cancar now over 5 years survival with Homeopathy Medicine etc . Please read my survivor story posted in ABTA USA & in Inspire . If you want any help from me re ur father GBM ,please contact me . My email ID traha@rediffmail.com Best wishes Tapas Raha

RE: Looking For Glioblastoma Survivors Stage 4

by drowen on Tue Jun 11, 2013 03:09 PM

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On Jun 11, 2013 11:54 AM Agrestigrl wrote:

I was diagnosed 6/2011 with stage IV GBM, I was found having a seizure in my home and at first THET thought was a bleed, only a few weeks later to discover a 4cm mass under the blood on follow up. It has been a long journey, though luckily I live in a state where some of the best cancer care is located,the mass was respected and 3/4ths removed, I beg and radiation soon after, twice a day for many weeks, followed by Temodar which I was unable to take as I repeatedly required platelet infusions.so "" target="_blank" rel="nofollow">http://infusions.so " target="_blank" rel="nofollow">infusions.so it had to be stopped , another chemo started, which I unable to remember the name, it was a clinical research med, it unfortunately did not work and had to be stopped, another chemo began after a 4 month wait in order to give my labs time to get normal, bausutinib began, which seemed to work in begining but then again tumor grew, Avastin infusions began which we at first had a nice response to, again the beast as I call the GBM grew. avastin will continue but lumestine is being added in order to try to hit tumor harder. The beast is currently inoperable as it has wrapped itself on the main vessel of the brain.i also am on decadron for brain swelling and I had sodium washed at one point, keppra twice a day, nuvigil was begun but insurance will not cover it, I have also tried novocure , but had to stop as I was already on one clinical trial and they would not allow 2 at same time, good luck to all, try to stay positive, my prayers go out to all affected by this horrible disease

Dear Agrestigrl,

My 44 year old son was diagnosed with S4 GBM in Oct 2005. After the usual surgery (in New Orleans- just post Katrina ) we when to MD Anderson in Houston for additional surgery then Radiation and Temodar (Feb -March 2006). We returned to New Orleans and didan entire yearof Avastin and CPT-11. We have seen no changes in Rob's MRI in the last 7-8 years.

It does happen, please do not give up hope. Good luck and as always those of us that read and write on this Blog with pray for your treatments to be effective.

RE: Looking for Glioblastoma Multiforme Stage 4 survivors (brain cancer)

by raharaha on Tue Jun 11, 2013 04:53 PM

Quote | Reply

On Sep 29, 2012 3:59 AM mgreggsmith wrote:

I am one of those strange cases who, after nearly 6 years, is doing fine following surgery, radiation and chemotherapy for a stage 4 GBM.  So don't ever give up.

Here is an article from some of the top neuro-oncologists in the country.  You may find it useful.

http://www.healio.com/hematology-oncology/neuro-oncology/new s/print/hematology-oncology/%7B11c4aa87-7f36-44e3-91d2-518da4cc0d6b%7D/new-therapies-improving-survival-in-patients-with-glioblastoma"" target="_blank" rel="nofollow">http://www.healio.com/hematology-oncology/neuro-oncology/new target="_blank" rel="nofollow">http://www.healio.com/hematology-oncology/neuro-oncology/new

If you can't open it, just go Google and search for the title of the article:  "New therapies improving survival in patients with glioblastoma."

Good luck.

Gregg

Dear Gregg , Thank you for ur advice being GBM suffer . You must have read my full story till date as my next MRI ID due in July . Tell me how many surgury have you undergone so far ? What is ur age ? I am 62 + ,but I had ONE Surgury so far . Which area of tyhe brain is the Tumor located ? Mine is Left Pareital . Wish you long life . Rgds Tapas Raha Kolkatta 700 019 India Email traha@rediffmail.com
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